Women With Epilepsy: Causes for Concern

Abstract

Prevalence of Self-Reported Emotional, Physical, and Sexual Abuse and Association With Fear of Childbirth in Pregnant Women With Epilepsy: The Norwegian Mother, Father, and Child Cohort Study

Vederhus J, Husebye ESN, Eid K, Gilhus NE, Bjørk MH. Epilepsia. 2022;63(7):1822-1834. doi:10.1111/epi.17242

Objective:

This study was undertaken to examine the prevalence of self-reported experiences with abuse in pregnant women with epilepsy and the association between having experienced abuse and childbirth expectations, particularly the fear of childbirth.

Methods:

We performed a cross-sectional study of women with and without epilepsy enrolled in the Norwegian Mother, Father, and Child Cohort Study 1999–2008. Data on epilepsy diagnosis; antiseizure medication (ASM) use; emotional, physical, and sexual abuse; and childbirth expectations were collected from questionnaires completed during gestational Weeks 17–19 and 30.

Results:

Our study population included 295 women with ASM-treated epilepsy, 318 women with ASM-untreated epilepsy, and 93 949 women without epilepsy. A total of 115 women (47%) with ASM-treated and 132 women (57%) with ASM-untreated epilepsy reported any emotional, physical, or sexual abuse, compared to 25 100 women (32%) without epilepsy. The adjusted odds ratios (aORs) for having experienced any abuse were 1.8 (95% confidence interval [CI] = 1.4–2.3) and 1.8 (95% CI = 1.4–2.2) for ASM-treated and ASM-untreated epilepsy, respectively. A total of 29 women (11%) with ASM-treated and 34 women (11%) with ASM-untreated epilepsy reported having been raped, compared to 3088 women (4%) without epilepsy (aORs = 2.8 [95% CI = 1.8–4.1] and 2.9 [95% CI = 2.0–4.2], respectively). In nulliparous women with ASM-untreated epilepsy, having experienced abuse was associated with fear of childbirth; 22 women (31%) with abuse experiences reported fear of childbirth compared to five women (7%) with no experience of abuse (aOR = 5.4 [95% CI = 1.7–17.2]). This association was not seen in multiparous women or in women with ASM-treated epilepsy. Significance: More women with epilepsy reported emotional, physical, and sexual abuse than women without epilepsy. Such experiences may be associated with childbirth expectations.

Persistent Knowledge Gaps Between 2005 and 2020 in Women With Epilepsy: Comparison of Multicenter Studies From Germany

Mann C, Zinger E, Schmitz B, May T, Rosenow F, Pfäfflin M, Schulz J, Menzler K, Langenbruch L, Bierhansl L, Knake S, Hamacher M, Süß A, von Podewils F, Schubert-Bast S, Strzelczyk A. Seizure. 2022;100:36-43. doi:10.1016/j.seizure.2022.06.004

Objective:

Epilepsy is a chronic condition that can affect patients of all ages. Women with epilepsy (WWE) require access to specific counseling and information regarding issues related to contraception, pregnancy, and hormonal effects on seizure control and bone mineral density. This study investigated the knowledge among WWE regarding their condition, and whether epilepsy-specific knowledge has improved over the last 15 years.

Methods:

A total of 280 WWE aged 18 to 82 years participated in this multicenter, questionnaire-based study. The study was conducted at four epilepsy centers in Germany, between October 2020 and December 2020. Sociodemographic and epilepsy-specific data for participating women were analyzed and compared with the results of a similar survey performed in 2003–2005 among 365 WWE in Germany.

Results:

The questionnaire-based survey revealed considerable knowledge deficits without significant improvements over the last 15 years, particularly among those with less education and with regards to information on the more pronounced effects of epilepsy in older WWE (>50 years), including interactions with menopause and osteoporosis. In WWE ≤29 years, a significant increase in the knowledge score was observed in 2020 compared with this age group in 2005 (mean 7.42 vs. 6.5, p = .036). Mothers frequently reported epilepsy-related concerns regarding childrearing, particularly of seizures scaring their child and the need to rely on other people.

Conclusion:

WWE continue to demonstrate inadequate epilepsy-related knowledge. Despite increasing information availability and the aspiration toward better awareness among medical professionals, overall knowledge has not increased sufficiently compared with the levels observed in recent studies.

Commentary

Diagnosing and treating patients with epilepsy carries no shortage of challenges across patient demographics. That said, women with epilepsy (WWE) pose special considerations. The latest Epilepsy Quality Measurement Set encourages counseling about folic acid, contraception, and teratogenicity. ¹ Their statement aptly points out, though, that the “outcome” (e.g., whether folic acid was prescribed) is not all that matters—it’s also about the counseling process and ensuring that we clinicians ask our patients the tough questions needed to understand their biopsychosocial starting point.

Two recent articles explored issues relevant to WWE.

Mann et al ² quantified WWEs’ knowledge of women’s issues. They included 365 WWE from a tertiary center and private practices in ∼2005, then another sample of 280 WWE in 2020 from multiple German centers. They developed a 16-point “true/false” quiz. The result—the average score was an “F’: mean number “correct” was about 6/16 in both samples, slightly higher if younger or more educated. Now, some of these questions were more consequential than others. For example, in response to “WWE are more likely to have menstrual problems than WWoE,” ∼20% correctly responded yes, which is difficult to know how to take to the bank clinically. More importantly, only ∼50% answered “yes” and 40% “don’t know” to whether folic acid reduces fetal malformations. Furthermore, less than 50% correctly identified that anti-seizure medication (ASM) serum concentrations can drop in pregnancy, ASMs can cause bone loss, or that oral contraceptives can increase ASM metabolism, many women responded that ASMs should be reduced or discontinued during pregnancy, and 40% were worried that breastfeeding will harm their child.

These findings are concerning. It is well-documented across conditions that patients may misunderstand treatment benefits and harms, ³ and patients with and without epilepsy alike often lack awareness of chronic conditions. ⁴ Imperfect health literacy is in no way unique to epilepsy, women, or reproductive issues. Specifically here though is that a soon-to-be pregnant patient who does not understand the role of folic acid, the importance of ASM serum monitoring and possible dose increases during pregnancy, or the possibility that that seizures can harm a fetus and is worried that breastfeeding will be harmful, or an older patient unaware of the possible benefit of vitamin D, may be perfect storms for preventable adverse outcomes.

However, before catastrophizing, recognize that a “quiz” is only valid if asking the right questions of the right people. Take questions like, “Birth control pills may cause certain ASMs to be metabolized more quickly…” or “Some ASMs may cause birth control pills be become ineffective.” Such questions do not apply equally to all respondents. Older patients scored lower and rated self-knowledge lower than younger patients, but many patients were beyond reproductive age (maximum age 82). It is also unclear how many patients were on interacting contraception/ASMs (e.g., estrogen induces lamotrigine) or ASMs particularly tied to osteoporosis for whom such questions were most applicable, so these results could overstate the problem. On the other hand, a “correct” answer may not necessarily be reassuring. Recognizing benefit does not guarantee an accurate understanding of the magnitude of benefit. Furthermore, knowledge is only one piece of a complex puzzle—attitudes, social norms, and perceived control all influence behavior in ways that are difficult to capture by “yes/no” “knowledge” questions. Thus, while this survey highlights that we can likely do better, it is only the starting place.

The bad news gets worse. Vederhus et al ⁵ included ∼600 pregnant WWE and ∼90 000 pregnant women without epilepsy (WWoE) in a Norwegian cohort 1998-2008 that linked survey responses to national registry data. Forty-seven percent of pregnant WWE versus 32% of pregnant WWoE reported any emotional, physical, or sexual abuse, and 11% versus 4% reported a history of rape. Among ASM-untreated nulliparous WWE, history of abuse was associated with increased fear of childbirth (31% with past abuse vs 7% without abuse), but abuse was less correlated with fear of childbirth in other groups. Their other data dealt with patient preferences. Nulliparous ASM-treated WWE preferred having a cesarean section (27%) compared with ASM-untreated WWE (14%) or WWoE (15%), and ASM-treated WWE more commonly wished for pain relief during labor than the other groups.

While epilepsy clinicians often think of abuse as risk factor for psychogenic nonepileptic seizures, the truth is not so simple. Vederhus et al demonstrate an alarming 2.8-fold increased odds of rape among pregnant WWE versus WWoE. The authors concluded “clinicians should be aware of these associations when treating women with epilepsy.” This may be an understatement—these results implore that epilepsy clinicians take a broader view of our patients beyond seizure control. Still, other results from their study are more difficult to interpret. What does it mean for epilepsy clinicians to “be aware” that ASM-treated WWE had a 2-fold increased odds of preferring pain relief or having a cesarean section than WWoE, or that abuse increased fear of childbirth among ASM-untreated WWE but not or barely at all in other groups? Some degree of statistical noise is always a concern when making many comparisons. More importantly, such survey results do not answer why these relationships may be the case, and despite the need for us to take a holistic approach some of these questions regarding labor and deliver may be outside of our scope of practice as epileptologists. It is also surprising that in this cohort less than half of WWE were on ASM treatment, thus one wonders about choosing to be on ASMs as a marker of preferences for more intensive health care. Despite some difficulty interpreting the various presented interactions, these results remind us that sadly abuse is pervasive and has important implications on current health care preferences.

The word doctor is derived from the Latin verb “docere,” meaning “to teach.” The first step involves educating ourselves (see relevant examples ^6,7 ) so that we can formulate and pass on our agenda and knowledge to patients, their partners, and family regarding what we view as key treatment ingredients. Despite realistic office-based time pressures, there is no way around the next steps—establishing a therapeutic alliance where the patient feels safe discussing sensitive topics, followed by sufficient open- and closed-ended questions to uncover worries that patients may bring up only if provided the opportunity.

Samuel W. Terman, MD, MS
Department of Neurology, University of Michigan